Texas Children's Hospital helps young girl with rare syndrome

HOUSTON (KTRK) -- When Madison was born, it was the beginning of a long and challenging journey for her and the family.

"My thoughts were OK, how do we handle this, and what do we do," Madison's mother Jodi Gatlin said.

"Madison was born with a complex lymphatic anomaly. This is quite rare," explained Dr. Ionela Iacobas, a vascular anomalies specialist.

Known as Cloves Syndrome, there are only 150 cases documented worldwide. It took a specialized medical team to treat Madison's condition, so the family moved from Florida to Houston.

"We traveled for about 4 months before we actually decided to make the journey to move here," Jodi said.

Dr. Iacobas said Madison's case is pretty extensive, affecting both arms and her chest.

"The lymphatic system is not built properly, so if you don't have the proper lymphatic channels functioning the way they're supposed to, you have these pools of fluid. You have these cysts, " Dr. Iacobas said.

Not only has it been important for Madison to receive continued treatments and therapies, it's been equally important for the family to do their part as well.

"We were told that she had zero range of motion. So at that point, I worked on her range of motion," Jodie said. "When she was four weeks old, she had full range of motion."

Over time, Madison defied the odds.

"They told us that she would probably not sit up. She probably would not crawl on time. She would be very behind. She's doing all of those" Jodi said.

"We work as a team. We have one expert in certain areas in different places. This is all very important and helps the family go through" Dr. Iacobas said.

The team of specialists in the Vascular Anomalies Center at Texas Children's is hopeful about Madison's future.

"With the medical therapies, vascular therapy and eventually with restructuring plastic surgery, I think she will be quite good," Dr. Iacobas said.

"Everyone looks different. She just has bigger muscles. She's my Hulk, I love here. She's just not green, it's OK." Jodi said.